At this point I figure they say this for one of two reasons (but please let me know if you think of another!):

They don’t believe that my symptoms are as bad as I say they are.

They can not possibly imagine how bad my symptoms are, because they have no frame of reference.

I want to believe that it is usually #2, that they just can’t imagine daily nausea that is so bad, you’re willing to cut your favorite foods out of your diet to be rid of it. But really…. who couldn’t imagine that? And if it’s #1, that just pisses me off to no end. After all, these aren’t strangers, these are friends and family who are saying this. They aren’t suggesting that it isn’t worth it for me to try these “drastic” measures of changing my diet or trying new supplements, but they say that they would never be able to do it. Maybe they’re trying to suggest that they’re too weak to try and therefore I’m strong? But in the context, that’s not how it sounds. It sounds like the pain could never be so bad that it would be worth giving up desserts on the off chance that it might help.

So for all of you doubters out there, have someone whack you as hard as they can in the knee a few times with a hammer. Now, would you rather have someone do that every hour, or would you rather give up chocolate forever?

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7 Responses to The oh-I-could-never-do-that response

Im “lucky” (or so I’ve been told) that my disabilities are fairly painfree. I’m usually told that by someone who has never been short of breath just standing up.

That said, I do occasionally have pain. Recently the pain lasted close to two weeks. If I wasn’t certain it was coming to an end soon, if daily, unremitting pain were to be my future, I could not do it. I would not go on. I could not. I know this for a fact.

Yet I’ve been told I didn’t know what I was talking about, that you get through it. By people who do get by and live with it. Well I am me, and I know what I can and cannot tolerate.

I think if we start by being less judgmental of each other it will go a long way.

Stuckintexas, I am sorry to hear that you have been experiencing pain. To respond to your concern, first, I was referring to treatments, for which we each have a choice whether or not to try them. Second, when you say that you could not stand the pain if it were to last longer, what would the alternative be? For me, I stand it because I have no choice. There is no cure, so I must live with it. I see no alternative. That’s me. It may be different for you.

I usually think people really do mean the best when they say that. I think they are going for the “you’re so strong, I don’t know how you do it.” thing. I can’t see how they could be implying that they don’t believe your symptoms are that bad. Just my thoughts. 🙂

I feel for you. I’m gluten intolerant and have fibromyalgia. People are incredulous that I don’t eat bread or anything with gluten in it. If it made them so sick they couldn’t get out of bed for 3 days they’d avoid it too. I hate the “how are you?” question. There is no good answer to that if you have fibromyalgia. You either lie and say “fine” or you tell the truth and sound like you’re whining.

[…] at not being able to eat the same food that they eat. I wrote about this a while back with “The oh-I-could-never-do-that response” and this disbelief is just a projection of that feeling. Apparently many people can’t […]

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I am not a doctor or any other sort of medical professional. I am writing my own thoughts, feelings and opinions here. Please consult your own medical professional for advice on your own particular situation. You are responsible for your own choices.